"Scleroderma? Yes, I know a little about it."

Unlike most of us, I know more about scleroderma than I ever desired or imagined. This autoimmune disease that touches an estimated 300,000 in America alone comes in two forms, localized and systemic, and generally afflicts four times as many middle-age women than men. Children, however, are not immune.

Scleroderma affects everyone differently.

My wife Fay (we've lived in southeast Portland since 1999) has lived with the misery and pain of this disease for the past 20 years, manifesting itself in several ways, including interstitial lung disease (already destroying nearly half of her lung capacity), and horribly painful finger calcium deposits and reduced blood flow in the hands known as Raynaud’s phenomenon. On top of all that, she experienced a 6×11-cm pelvic calcium growth that required two major surgeries recently with absolutely no guarantee it won’t come back.

Scleroderma also means Fay has to avoid direct sunlight, as well as being hypersensitive to hot and cold extremes. Gloves are a constant, even during the summer when air conditioning gets really cranked up in many public venues.

The disease forced my wife to prematurely end her career as an x-ray technologist when she could no longer properly handle some of the associated equipment because of her increasingly disabled hands. Constant aches and pains, cramps, numbness and tingling sensations all over her body now requires regular physical therapy treatments to get at least some measure of relief.

All this and Fay is considered lucky compared to others in the local scleroderma community. Richard Bates of Hillsboro was so ravaged by scleroderma that he needed a double lung transplant. At one time, the skin on the upper body of a female friend in NE Portland had turned so hard and immobile you could literally tap on it like a piece of wood (scleroderma translates into “hard skin”).

Erion Moore II of Tigard, until just a few years ago a promising amateur basketball player working at a juvenile probation facility who was looking forward to a full-time career in law enforcement, has been so debilitated that like a frail elder who walks with a cane, this young man now seriously worries about not being able to lift himself off the floor or ground if he stumbles and falls. He recently had stem cell transplant surgery in Chicago.

Oregon and SW Washington are more fortunate than a lot of places because the local scleroderma support group has been an active presence here since the early 1980′s. For decades, regular free support group meetings have been held at Legacy Good Samaritan Hospital under the guidance of Donna Stone to provide comfort, understanding and information to countless numbers of people living with scleroderma.

This outstanding community health resource has been so valuable because even today many doctors continue to have difficulty diagnosing and treating scleroderma, which has no known cause or cure.

The support group led by Stone, herself a scleroderma patient, has evolved into the Oregon Chapter of the Scleroderma Foundation, a national patient education and advocacy nonprofit. With no paid staff, Stone, Bates, Liz Orem-Bedel, Alice Anson, Denise Bates, Maria Rivelli, Christina Current Fidalgo, David Fidalgo, myself and a small handful of others struggle to get out the word about scleroderma and the people it affects locally.

Annual education seminars, plant sales, fair booths, national conference representations and benefit walks are some of the events and activities employed by the chapter. More often than not, news of local scleroderma people in any Oregon newspaper is found only in the obituaries.

Remarkably, my family’s scleroderma experience does not end with my wife. I have an incredibly strong sister-in-law back in the Midwest who also lives brilliantly with this disease. Years of scleroderma involvement have given her countless medical emergencies, hospital stays and procedures. It has gotten to the point where she demands to simply know “what are you going to do in the hospital that can’t be done at home? If it can be done at home then that’s where it’s done.”

Although the Oregon chapter’s volunteer activists regularly have to work through their own health challenges, they rarely tire or fail to remain optimistic. Only a few weeks after her surgeries, my wife Fay found the strength to meet with US Congressman Earl Blumenauer as part of an awareness team effort.

Talk about multitasking.

With the continued efforts and unflagging commitments of Oregon and Washington state folks like Fay, Richard, Erion and their chapter colleagues, a lot more people in these parts will soon be able to say that they too now know a little bit more about scleroderma.

Dr. Lorinda Chung, MD, MS -- Director of the Scleroderma Center and Co-Director of the Multidisciplinary Rheumatologic Dermatology Clinic at the Stanford University School of Medicine -- will be the keynote speaker. Dr. Chung will appear with Gastroenterologist Harald L. Schoeppner, M.D., Ph.D., FACP, FACG, AGAF, a GI specialist at Legacy Medical Group-Gastroenterology, at the seminar hosted by the patient support group of the Oregon Chapter of the Scleroderma Foundation.

Audience Q&A with each speaker is a regular highpoint of the annual seminar, an opportunity for attendees to raise specific questions and personally engage with the presenting health care experts. The 10am to approximately 3pm seminar will provide lunch and light breakfast at no cost to all attendees.

Walk-in registrations are available at the door starting at 9am, but pre-registration is encouraged to help us better plan for this always well-received education seminar.

The annual event is named in honor of its founder Cheri J. Woo, who died in 2007 after a long struggle with scleroderma and cancer. Cheri served the Oregon Scleroderma Chapter with distinction for more than a decade as a board officer, awareness advocate, fund-raising specialist, patient supporter, and education promoter. She began the first chapter education seminar in 2001.

Dr. Lorinda Chung, MD, MS

Dr. Chung is an Assistant Professor of Immunology, Rheumatology, and Dermatology at Stanford University School of Medicine. She is the Director of Stanford’s Scleroderma Center and Co-Director of the Multi-disciplinary Rheumatologic Dermatology Clinic. Dr. Chung is actively involved in clinical, translational and epidemiologic research on scleroderma. She is the principal investigator for multiple clinical trials of new potential therapies for scleroderma patients.

According to various online sources, the Stanford Rheumatologic Dermatology Clinic, staffed by Drs. David Fiorentino and Lorinda Chung, was established in 2004 and quickly became the primary clinic for all patients with scleroderma referred to Stanford. Their patient population continues to grow and the Stanford Center is now known as the premiere clinical Center for scleroderma patients on the West Coast.

Stanford’s clinical trial program for scleroderma continues to expand and the Center is one of the leading sites participating in all the major multi-center clinical trials. Funded by the NIH, Stanford is the lead site for the first ever double-blinded multi-center clinical trial evaluating a B-cell depleting therapy (rituximab) in the treatment of scleroderma-associated pulmonary arterial hypertension.

Dr. Chung is focused on teaching and mentoring medical students and fellows, and encouraging the brightest minds of the future to pursue careers in scleroderma research.

Her commitment to scleroderma was prompted by her sister’s diagnosis. “I am devoted to providing superb care to patients with scleroderma & I am absolutely committed to further developing the Stanford Scleroderma Center of Excellence where we will perform state-of-the-art research to better understand scleroderma, & ultimately to develop new treatments for this devastating disease,” Dr. Chung said.

Dr. Harald L. Schoeppner, M.D., Ph.D., FACP, FACG, AGAF

According to his online biography, Dr. Schoeppner, a specialist in Gastroenterology, says his current practice offers both basic and general GI services as well as highly skilled endoscopic techniques. "Legacy has given me the opportunity to introduce state-of-the-art Gastroenterology and Endoscopy while still keeping the patients and their families the centerpoint of all care."

From 2007 until 2012, Dr. Schoeppner established a busy GI practice in Walla Walla, WA introducing tertiary endoscopy skills within a framework of general GI. In addition, he served as Governor for the American College of Gastroenterology.

While in Tacoma, WA from 1998 to 2007, Dr. Schoeppner developed one of the first Hospitalist Gastroenterology service in the US. This combined his interests in acute care GI with all the technical and organizational skills necessary for operating a busy service.

Dr. Schoeppner received his medical degree from the University of Wuerzburg in Germany and then completed an internship and residency in internal medicine and was awarded a fellowship in gastroenterology at Henry Ford Hospital in Michigan.

"I realized early on as a medical student that Gastroenterology is the field in Medicine where I could find fulfillment and happiness," Dr. Schoeppner remarked. "I wrote my dissertation focusing on patients with Inflammatory bowel diseases. During my residency I spent additional time rotating in GI. My fellowship at Henry Ford Hospital included a stint in basic science understanding the molecular basis of colon cancer.

"Ultimately, I chose a career in clinical medicine combining my enthusiasm for the field and its huge potentials with my passion for patient care."

Additional training in endoscopic ultrasound was acquired in Munich, Germany, Charleston, SC. and the Mayo clinic.